When people affected by Alpha-1 Antitrypsin Deficiency gather—everything changes.
Knowledge increases. Confidence grows. Isolation ends. Hope multiplies. Standards of care shift. Lives are saved.
Alpha1 and You Events are The Mark Egly Foundation's commitment to bringing together patients, families, physicians, researchers, advocates, and supporters in meaningful ways that educate, empower, and energize the entire AATD community.
When Alpha1 IQs go up, so will the confidence of Alphas increase—and their outlooks for their health and their futures will improve dramatically.
Events are where:
For decades, AATD has been considered extremely rare. Less than 10,000 individuals were ever diagnosed worldwide under the old paradigm that AATD only affects lungs and livers severely.
The result?
When we go from less than 10,000 individuals ever diagnosed to millions—as Mark's discoveries suggest we should—you will see massive growth in:
It all starts right here with our Foundation—and with events that bring us together!
The Premier Annual Gathering for the AATD Community
What It Is: A multi-day conference bringing together patients, families, physicians, researchers, pharmaceutical representatives, policymakers, and advocates for comprehensive AATD education, networking, and advocacy planning.
Who Should Attend:
What Happens:
2026 Alpha1 Summit: [Location] - [Dates] - Registration Opening Soon
Seven Days to Change How the World Sees Alpha-1
When: [Annual dates - potentially April during Lung Health Awareness Month]
What It Is: A week-long campaign combining virtual events, local gatherings, media outreach, and advocacy actions to dramatically raise awareness of AATD among the public and medical professionals.
Daily Themes:
How to Participate:
Where Physicians Learn to Change Standards of Care
What It Is: An intensive medical education event bringing together physicians across all specialties to learn about AATD's systemic effects, diagnostic approaches, treatment protocols, and how to integrate AATD awareness into clinical practice.
Format:
Target Audience:
Impact: Physicians leave with knowledge, confidence, and tools to identify AATD in their patients, potentially saving hundreds of lives over their careers.
Advancing Science, Accelerating Cures
What It Is: A day dedicated to sharing research findings, fostering collaboration, and connecting patients with studies that need participants.
Sessions Include:
Why It Matters: Patient participation drives research forward. Research Day makes it easy to get involved.
Local Support, National Network
Format: Casual, in-person gatherings of AATD patients and families in cities across the country/world.
Typical Activities:
Finding Your Local Group: Visit our website for the Alpha1 Meetup Directory or start a group in your area (we provide support!).
Deep Dives into AATD Topics
Topics Rotate Through:
Format: 2-3 hour interactive sessions with expert presenters and Q&A.
Location: Hybrid (in-person and virtual attendance options).
Steps for Awareness, Funds for Research
What It Is: Community walk/run events raising awareness and funds for AATD research, education, and patient support.
Event Features:
Impact: Funds raised support Foundation programs and research grants.
How to Participate: Join a walk in your area, form a team, or organize a Walk for Alpha1 in your community.
Learn from Anywhere
Topics Include:
Format:
Schedule: First Thursday of each month at 7pm ET
Connection Without Leaving Home
Groups for Different Needs:
Format: Video conference, small group (8-12 people), facilitated discussion, confidential.
Schedule: Multiple times weekly to accommodate different time zones and schedules.
Your Questions, Answered in Real-Time
What It Is: Monthly live-stream Q&A sessions where patients can ask questions directly to AATD specialists, researchers, or experienced patients.
Rotating Experts:
Format: Submit questions in advance or live, get immediate answers, recorded for future viewing.
For the Newly Diagnosed
Frequency: Monthly, first Saturday of each month
What You'll Learn:
Format: 2-hour virtual or in-person session, small group, plenty of time for questions, connection with peer mentors.
Cost: Free
Registration: Required (we want to prepare materials specific to participants' genotypes)
Practical Skills for Better Health
Workshop Topics:
Format: Hands-on, interactive, leave with practical tools and action plans.
Training the Trainers
Target Audience: Medical residents, fellows, practicing physicians, nurses, respiratory therapists, physician assistants, medical students.
CME Credits: Available for all sessions
Content Includes:
Impact: Each trained physician can identify and help dozens of undiagnosed patients over their career.
Removing Barriers to Diagnosis
What We Provide:
Who Should Get Tested:
Locations & Dates: Announced on our events calendar—watch for testing events in your area!
Partnership: Often held in collaboration with hospitals, health fairs, and community organizations.
Meet Your AATD Care Team
What They Are: Events at AATD Clinical Resource Centers introducing patients to comprehensive AATD care.
What Happens:
Goal: Connecting patients with expert, coordinated care.
Fun, Connection, and Celebration
What It Is: Family-friendly events celebrating the AATD community with activities for all ages.
Activities:
Why It Matters: Chronic illness can be isolating. Family Day reminds us we're part of a supportive, vibrant community.
Frequency: Annual or semi-annual regional events
Celebrating Together
Events Throughout the Year:
Format: Both virtual and in-person options, inclusive of all community members regardless of location.
Casual Conversation, Deep Connection
What They Are: Informal, small-group gatherings (5-10 people) at local coffee shops or online.
Topics: Whatever participants want to discuss—can be AATD-focused or just life, connection, and support.
Frequency: Ongoing, self-organized by community members with Foundation support.
How to Join or Start: Visit our community platform to find coffee chats near you or get resources to start one.
Your Voice, Amplified
What It Is: A coordinated day of advocacy action where AATD community members contact legislators, testify at hearings, meet with policymakers, and push for change.
Focus Areas:
How to Participate:
Impact: Collective voices create change. Previous advocacy efforts have resulted in [specific policy wins].
Your Experience Creates Change
What They Are: Events where patients share their AATD journeys with audiences who need to hear them—medical students, practicing physicians, policymakers, media, the public.
Why It Matters: Personal stories change hearts and minds. They:
Training Provided: We help you craft and deliver your story effectively and comfortably.
Opportunities: Medical schools, conferences, legislative hearings, media interviews, documentaries, awareness campaigns.
Understanding Your Research Options
What They Are: Events where researchers present active clinical trials, explain what participation involves, answer questions, and facilitate enrollment for interested patients.
Topics Covered:
Why Attend: Clinical trials offer:
Your Data Drives Discovery
What They Are: Opportunities to enroll in AATD patient registries that collect long-term health data to advance research.
Why It Matters: Registries provide researchers with:
What's Involved: Periodic surveys, occasional data sharing from your medical records (with your permission), connection to research opportunities.
Incentives: Some registries offer compensation, free testing, or other benefits.
January
February
March
April
May
June
July
August
September
October
November
December
Detailed calendar with dates, locations, and registration information available at markeglyfoundation.org/events
Stay Informed:
Register Early: Many events have limited capacity or require advance registration for materials preparation.
Bring a Friend: Many find it helpful to attend with a support person, and you might introduce someone to information that changes their life.
Want to organize an Alpha1 event in your community? We provide:
Event Ideas You Could Host:
Contact: events@markeglyfoundation.org to discuss your ideas!
We Need Help With:
Benefits of Volunteering:
Sign Up: volunteer@markeglyfoundation.org
Corporate and Individual Sponsorships Welcome
Sponsorship Benefits:
Sponsorship Levels:
Contact: sponsorship@markeglyfoundation.org
Before Attending Events:
After Attending Events:
As Events Grow, We See:
Events Drive:
One event can spark a chain reaction that saves thousands of lives.
As We Grow from 10,000 to Millions Diagnosed:
Every person who attends an event:
You don't have to attend every event. Start with one. See what happens.
"Attending the Alpha1 Summit changed my life. I went from feeling alone and hopeless to feeling connected and empowered. I met my now-best friend there, found a doctor who actually understands AATD, and learned strategies that have dramatically improved my health." — Jennifer, ZZ, diagnosed 2023
"As a newly diagnosed patient, the AATD 101 Orientation was exactly what I needed. Clear information, supportive people, and practical next steps. I left feeling like I could handle this." — Marcus, MZ, diagnosed 2025
"The Uniting Doctors Symposium transformed my practice. I've now diagnosed 15 AATD patients who would have gone undetected. These events save lives." — Dr. Patel, Pulmonologist
"Our local Alpha1 meetup has become my lifeline. Just knowing I can grab coffee with people who 'get it' makes the hard days bearable." — Sarah, SZ, diagnosed 2020
"I attended a Walk for Alpha1 with my mom (who has AATD). I got tested at the event and found out I have it too. Early diagnosis is giving me opportunities my mom never had. That walk literally changed the course of my life." — David, age 28, ZZ
1. Check Out Our Event Calendar
Visit: markeglyfoundation.org/events
2. Register for an Upcoming Event
Don't wait—spaces fill quickly for popular events!
3. Join Our Events Newsletter
Get monthly updates on upcoming events: markeglyfoundation.org/newsletter
4. Connect on Social Media
Follow @MarkEglyFoundation for event announcements, live coverage, and community highlights
5. Consider Hosting or Volunteering
Email: events@markeglyfoundation.org
When we come together, everything is possible.
We transform:
Events are where community is built, knowledge is shared, lives are changed, and standards of care are transformed.
Events are where we go from surviving to thriving—together.
We have only just begun—and the best is yet to come.
Join us. Attend. Participate. Host. Volunteer. Sponsor. Share.
Together, we're building a future where no one faces Alpha-1 Antitrypsin Deficiency alone—and where millions benefit from the knowledge and community we're creating right now.
Alpha1 and You Events: Because together, we're stronger.
For complete event calendar, registration, and information:
🌐 Visit: markeglyfoundation.org/events
✉️ Email: events@markeglyfoundation.org
📞 Call: 1-800-ALPHA-EVENT
💬 Connect: Join our community platform to see all upcoming events
See you at the next event. We can't wait to meet you.